The end of ‘Ending HIV’

It’s done, folks, stick a fork in it.  The highly respected epidemiologist and World Bank Global AIDS Program Director David Wilson posted today that talk of ‘ending AIDS in a generation’ or ‘ending HIV by 2030’ is neither realistic nor helpful.  He writes:

The Durban 2016 AIDS Conference marks the end of “ending the HIV epidemic” as a feasible goal with the tools we have. We need new and better tools. Talk of ending AIDS has led to a widespread perception in the broader health and development community that this crisis is over. It isn’t and continued exhortations that we can end the AIDS epidemic with our existing armory may further undermine global recognition of and commitment to address this epidemic.

I have been incredibly critical of the way this discourse was premised on the idea that behavioural and social prevention strategies have failed.  Recently I acknowledged ‘Ending HIV’ was a tactical move by very experienced policy advocates to maintain global and local funding for HIV prevention and treatment in the face of the global financial crisis.  But although we have new knowledge and biomedical strategies like TasP and PrEP, the obstacles to gaining their full benefit remain, as always, behavioural and social.

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Critical reflections on practice

Esther Anatolitis has a great piece offering a set of provocations to critical reflection on our own artistic and creative practice, drawn from her presentation to Regional Arts Victoria’s Expanding Artistic Horizons symposium in Port Fairy in 2015.

A friend and colleague, Natalie Hendry, posted a recollection of those long questionnaires we all used to complete on LiveJournal and MySpace, and it struck me this list is similar.

So here are my answers. Feel free to copy it and fill in your own.

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What drives you?

At my best, a sense of mischief — playing in spaces and ways we’re discouraged from.
Other times, a gripping sense of rage or inadequacy. (Generative but hard to control.)

How do you make the space to understand what drives you?

I have to come at it sideways by making and taking unscheduled time for laziness and boredom.  And then understanding comes out of nowhere: oh, that’s what that was about.

And how’s your health?

It requires a lot of patchwork, at the moment, stitching together continuous care across a range of different physical, mental, financial, and spiritual providers and opportunities. 

What does your typical day look like?

I sleep as much as I can overnight — ten hours is best.  I try to drink a normal amount of coffee, get enough protein and eat enough fruit.  On a good day I do about two hours’ writing and two hours’ reading.  In good mental health I can write about 3,000 words a day.  In bad mental health I get into fights on social media all day and I struggle to write more than sentences.

When you need to think something through, what tools do you use? Be aware of how those tools structure your thinking before you’ve thought it all through.

Pen and paper.  Brainstorm first.  Then group into themes or axes.  I ask ‘what’s my angle?’ and ‘what’s my audience, purpose, tone and style?’  These are tools I’ve used since high school.  Lately I’m writing in much longer formats, arguments with more room for subtlety in them, and I’ve started using notes to self and various diacritics to coordinate that work over longer timeframes, interruptions by other work, or mental health issues.

Do you routinely reflect on what you’re making?

I have made a conscious effort to move away from writing in one hit, one big download fuelled by emotion, followed by hitting send.  I have learned to write more slowly. 

What stage is your practice at?

I’m at the stage of consciously pushing up against my limits, seeking to leave behind the naturalism and simplicity of my writing as an educator and a policy contributor, and instead develop the kind of playful control over critical language that I see in the work of my academic heroes.

Are you craving space and time for deep practice? Or are you craving instead the networks and provocations to broaden your practice?

I have both space and time for practice and the networks and provocations to draw my thinking out.  I need the constancy and discipline to make the practice actually bear results.

What is it about your practice that’s most sustainable? Unsustainable?

I can almost always hear whether there’s rhythm in my writing.  The unsustainable thing is the sense of ‘I can do this’.  It comes and goes without any rhyme or reason.

Are you able to articulate what a meaningful, productive, successful practice would mean for you?

Drawing on the sense of constancy and discipline, it would mean always writing at least 2 hours, developing the journalist’s commitment to deadlines, developing stronger faith in editors, starting to write when the deadline is still on the horizon rather than rushing up to meet me.  It would bring my collaborators into the process with me rather than hiding the writing away from them.

And how would you know?

My first thought was ‘it wouldn’t hurt so much’ but I know enough serious writers to know that’s probably not the case.  But that sense of ‘I can do this’ might not be so fickle.

Is your practice still developing?

I’m unlearning a lot of the defensive strategies and tics that I’d picked up in practice.  I’m developing my skills at interleaving personal narrative, research findings and technical discussion.

What risks are you still taking? Where is the risk in your practice?

The discomfort lies in writing the way I want to write for an cross-disciplinary audience.  The temptation is to use one of those defensive strategies — translation; pretending to speak in another language.  But I’m always so conscious, when I do that, of what things become harder or impossible to communicate.  The big risk lies in writing in language closer to my heart and hoping there will be an audience for it.

Where do your provocations to practice come from?

Often it’s the sense of ‘oh, that’s fucked!’  And then challenging myself to think it through carefully.  There are tactical pieces I’ve done, challenging e.g. The Hoopla on its attitude towards sex workers, or YEAH claiming to be the victims of homophobia, where I’ve just been so angry but I’ve worked really hard to stick to reasons and facts that an unbiased person could consider and accept. 

Are there mentors in your life? Someone in your life whose role is to challenge you – someone you already feel challenged by – someone outside of your field – more than one person – co-mentoring – formal and informal mentoring – ?

HEAPS.  There are so many people I could and will at different points mention and thank.  But there’s one person in particular, Megan McPherson, who brings a creative artist’s practiced reflection to the craft of academic thinking and writing and constantly provokes me to the same.

How do you set the most productive constraints for your work? Are you happy with the scope of your experimentations?

I try to write like Rey Chow.  I will never be as good as her, but her short, declarative topic sentences are miraculous.  Blogging is the place where I have the most freedom to experiment. 

What characterises your working style as an individual? As a collaborator? As a leader?

I want to do my thing in privacy.  I am terrible at collaboration.  Part of this is a learned habit of existential angst around writing and partly it’s the stop-start productivity of episodic depression.  Occasionally I will take the lead on an issue but I always want to ‘step up and step back’ – quickly.

How does your working style change as an individual? As a collaborator? As a leader?

A friend observed I have ‘hegemonic tendencies’… my style is not flexible.  Once I’ve thought something through I tend to have a clear vision of how a given situation works and I’ve weighed up the different pathways through it, and I can be incredibly stubborn in sticking to it.  I have often been told I need to communicate that understanding more frequently, consistently, patiently…  But that stubbornness is essential in human services work — without it, morphostatic processes kick in and organisations just do things the way they’ve always done them.  I need to develop my skills in maintaining the calmness to keep stubborn but still communicate what I want.

If you packed yourself off on a week-long retreat, what would you do? What wouldn’t you do? What could it mean for your practice? For your physical health? For your mental health? What could you make possible with that space and time? Or if you consistently dedicated fifteen minutes per day to this kind of reflection, what would it mean for your practice?

I would need to go somewhere without internet access.  I’d want to meditate in the morning and the evening.  I’d need a good chair and a desk.  A couple of those and I could knock out a book.  But I’d need a collaborator, someone doing exactly the same thing, to swap our drafts (for accountability) and read and talk about them in the evening. 

In fifteen minutes per day I could have a crack at imitating writers I admire. That’s what Stephen King recommends in his book On Writing. Hell, that’s Nam Le’s book The Boat in a nutshell.

Esther’s conclusion

It’s the arts. We’ve each chosen to live our lives at a high level of creative and intellectual intensity. If we don’t take our bodies with us, our bodies will take us somewhere else altogether. And this affects the work. And this is the work.

Make reflection a habit. Develop your commitments to your practice.

My conclusion

I’ve always argued that the work I do, getting funding for innovative programs, is creative. But I think I have a lot to learn from creative arts practitioners on how to think of my practice as something that’s separate from myself.  So many things about it would be easier were that separation clearer in my head.  This has been really helpful, and it has prompted me to re-read Twyla Tharp and Jane Bozarth.

The ethics of researching practice

Background: this is a short assignment for a compulsory subject, Qualitative Methods in Regulation and Governance.  I’m sharing it here because I’d love to hear your thoughts about what you would want from a researcher who was observing the development of a resource, campaign, or policy initiative involving your organisation or community.  I don’t have HREC approval yet so I’m asking out of personal curiosity rather than as research.

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Reflective practice

Section One of the National Statement on Ethical Conduct in Human Research (NHMRC 2007, ch. 1) sets out values that govern research with human participants, including respect for human beings, research merit and integrity, justice and beneficence. The assignment question asks about more pragmatic issues, such as sensitivities and conflicting interests, relationships of power, and conducting research in a way that is respectful and sensitive to participants. I understand these as the critical and practical dimensions of research conduct which, if managed badly during my project, may set the scene for the more fundamental values conflicts contemplated in the National Statement.

My project aims to undertake ethnographic study of the development of two campaigns in public health. This will include interviews and observations of public health practitioners in settings that include their own stakeholders, such as funders, policy-makers, colleagues from other organisations and, potentially, members of communities they are engaging with. Working within the ethics of care approach advocated by feminist thinker Carol Gilligan, which sees participants not just as isolated autonomous subjects but as interdependent – embedded in networks of personal and professional relationships that matter to them, and vulnerable to the consequences of my own choices, both in ways that may not be easily (or at all) visible to me. This is internally consistent with my research methodology of multi-sited ethnography, which sets out to trace the associations and connections within and between multiple research sites.

The practical recommendation of Gilligan’s theory is to attend closely to the details of the context or situation in order to understand how to protect the interests of those involved in it.  A particular challenge in my project will be the presence of multiple stakeholders who have agendas, power relations and interests that may be at odds with each other. Gilligan suggests that problems of this nature “require for (their) resolution a mode of thinking that is contextual and narrative rather than formal and abstract” (Liu, 1995). Since every narrative is multivocal, this invites consultation with my participants on how to manage the reputational risks and ethical concerns that arise.

However, my project does have an agenda: to identify opportunities where campaign development can more fully consider issues of stigma and health inequities. Being ‘sensitive and respectful’ runs the risk of shading into deception, if I conceal the extent to which I am listening for the purposes of later criticism. As a critical reflexive practitioner, I have often encountered the argument that criticism is ‘unfair’. As Adrianna Kezar (2003) argues, elite interviews have transformative potential – they can make participants aware of the gap between their ideals and their practice. Respect for my own participants may not mean protecting them from this awareness (e.g. ‘being sensitive’), but rather leaving them the power to decide what to do about it. From a practical standpoint this lets me report on successful resolutions of potential concerns, and demonstrates that my change project is achievable.

Unstuck

August came early this year. Most years, I have one bad depressive episode from December to about February, and another in August.

Last year I went on holiday in December, but I didn’t really escape it.  When I am depressed I am quite a different person — more stereotypically male, actually: my emotional range is limited to numbness/detachment and shades of anger from peeved to enraged.

I came back in January needing to pack up my stuff and find a place to live in Canberra, but instead, I froze.  Eventually I got moving again, booked a trip up to check out places with a friend of a friend, but it fell through.

Finally I did what I should have done to begin with — put a call out through my aunty network — and pretty quickly found somewhere lovely.

Then I needed to pack up my apartment, where I’d been living for eight years, one cat, two long relationships, one lovely flatmate and three terrible ones. I was still feeling pretty numb but now I really needed to get shit done, so I pushed through it.

Stephanie Convery had put me onto The Life-Changing Joy of Tidying Up.  Reader, I Marie Kondo’d my house move. There’s a great line of Brené Brown’s — “some people say ‘life’s messy — love it’, I say, ‘life’s messy, clean it up, organise it, and put it into a bento box.'”

I did that.  I wound up moving thirteen boxes, of which five were kitchen stuff, and I went from a whole apartment down to a room (and an office).  And I haven’t missed anything.

But I’d also decided I didn’t want to bring any of my emotional to-do list items with me.

Some items were pretty funny.  I shipped my ex minus one’s leather gear, which he’d been too embarrassed to bring home on the plane in case his luggage got x-rayed at customs.

I filleted an incredible personal archive of notes and working documents from five jobs.  I know people experience me as hypercritical but that’s nothing compared to how I view my own work, so that felt like a fifteen year retrospective of professional failure.  At one point I was thinking about doing my PhD on my own practice as represented in that archive — thankfully, my unconscious apparently recognised that as a stupid idea and I designed a project that looks forward and seeks to understand what’s happening now.  Much easier!

I took 14 years of tax returns into H&R Block.  My delay in sorting them out had made my last partner so uncomfortable he’d started talking about ending our relationship.  Having grown up with a parent who constantly narrated our income insecurity, dealing with money ratchets my anxiety levels up to eleven.  I don’t even claim expenses back.

I bought about five different kinds of hard disk interface to move all my files off about four different computers so I wasn’t lugging around old hardware.

People scoff at Kondo’s advice to keep nothing that doesn’t spark joy when you handle it. But the body knows.  You may not be able to reason or recall why, but your emotional brain remembers and you feel it as emotion, or prickling skin, or a cold pit in your stomach.

The danger is getting overwhelmed, though.  That’s certainly what happened to me.  I had about ten days to get myself packed up before the move.  I had to keep moving, keep packing, drop a Codral Original and a strong cup of coffee, 20 hours a day for 10 days.

In March and April there was a fair bit of numbness and in May it all came unstuck.  All that unprocessed excavation in my emotional archaeology had caught up with me.

There was some physical issue as well — I’d been to the doctor and I was very anaemic.  I thought this was the return of a blood disorder I’d lived with in my twenties and early thirties and I completely froze up.  (It has turned out to be a gallbladder issue.)

Getting unstuck again took about two months.  Apart from getting every pathology test under the sun, I got a mental health care plan from my GP to access counselling via the Better Access program.  That turned out to be a waste of time; the gap fee I was quoted for assessment, in line with the Australian Psychological Society’s recommended fee schedule, amounts to a quarter of my fortnightly income.

Things that helped:  my supervisor being supportive and super-chill about it;  lots of movies with Zoe and Owy;  finding a new meditation group at, ironically, the temple just across the road from my house;  learning how to get protein without eating meat;  applying for funding for field work got me excited again about the project I’d designed;  blogging here about fairly simple stuff helped to get the words flowing again.

I’m writing this because I talk all the time with friends living with the same and more serious issues and I want you/us to know: we’re not uncommon, unusual, or alone.

‘Pissed’ at Grindr

Mathew Rodriguez from Mic.com has written an excellent piece on the concerns I and others have raised about Grindr considering an ‘HIV filter’ on its app.

grindr people are pissed

I love Mic because they write about crunchy social justice issues with rigour and verve.  Also, because their house style permits a headline describing me as ‘pissed’. ^_^

What’s so great about this piece is that Mathew understands and demonstrates that stigma is not just about hurt feelings — it directly affects the success of prevention.

Racialising disease: new syphilis resource in Victoria

Photos have surfaced of a new syphilis resource in Victoria and it is ~problematique.~

Update: activist and TIM co-founder Nic Holas followed up with MSHC and they advised the resource was produced in 2013 and ‘pulled’ after complaints.  Copies of the resource pictured below were picked up this morning, so it seems they are still distributing it.

Syphilis resource from Victoria via Bryan Andy pers comm 12 July 2016

Hat tip and thanks to Bryan Andy for posting this and sharing his critique.

Let me describe the image: there is a phone displaying what looks like a dating app with tiled face pictures. Five of the tiles display smiling Anglo, Latino or Mediterranean faces. All of the remaining tiles are taken up by a photo of a Black or Asian man, tinted deep red, with the username ‘SYPHILIS’.

Beside the phone is a speech bubble saying ‘OMG he’s everywhere! SYPHILIS.’ Below it there’s some text providing facts about syphilis transmission and a fine print warning ‘Brochure contains explicit photographs of male genitalia’.

I have so many questions. Who produced this?  Was there a reference group? Which community organisations were consulted? Was it focus tested?

The explicit photos of STI infection make me think that it’s probably from the Melbourne Sexual Health Centre, because they love that shit.  If you’re doing their electronic admission questionnaire and you say you’re not sure if you have symptoms, they will show you page after page of diseased genitalia.  I took a friend there for his first ever HIV test and he nearly walked out of the clinic in horror.

The other give-away is the creative concept is so hackneyed: iPhones and app screens and ‘OMG’ are so last decade.  It reads like a Boomer attempting to be ‘hip ‘n’ happenin’.

I asked about a reference group and focus testing because these are both opportunities to challenge groupthink.  You might have a clinician who’s also a gay man, but a community educator has a much better understanding of how other gay men are different from him. 

Similarly, when we focus test, we’re inviting a discussion among a sample of participants as diverse as we’re able to recruit, in order to get a sense of the range of different possible interpretations of the stimulus material.

But this wouldn’t have made it to focus testing on any reference group I was part of.

It’s always good to invite a marketer or designer or photographer or illustrator or cultural studies researcher onto your reference group.  That’s because we understand that images have plural connotations.  They don’t always signify in the way we might intend them to.

We draw on a mental library of these connotations — a symbolic history of the culture that informs how audience members might interpret the images and therefore the message.

Accordingly, I ‘read’ the images above and their accidental references in these ways:

  • If audience members view the man pictured as Asian and we’ve overlaid his face with a red tint, the unconscious associations that might be triggered include the visual imagery used in propaganda stoking WWII fears of Asian invasion of Australia.
  • If the man pictured is viewed as black, then we’ve got an accidental reference to Tuskegee, where clinicians left African American men with syphilis untreated for decades in order to study the natural progression of the illness. We’re also then referring to racial stereotypes of black men as hypersexual spreaders of disease, as seen in the moral panic about bisexual black men ‘on the down low’ last decade.

As an American colleague recently explained to me, American social science maintains a distinction between two competing systems of differentiation: race and ethnicity.  I mention America because I’m pretty confident this image was constructed using stock photography or a photo-composite taken from America.

In the image, the uninfected people are shown as Anglo or light-skinned ‘ethnic’ while the guy who poses a threat to them — and by extension the audience member — is depicted as ‘racially other’.

Racist discourse often draws analogies between immigration and plague, subjugated and racialised others as pestilence, and this imagery unwittingly reproduces that analogy.

I understand stigma, with Parker & Aggleton (2003), as the production of difference in the service of power — in ways that normalise unjust social orderings.

The pictured resource exemplifies this.  It visualises an association between disease, contagion and non-white race. In other words, it marks out non-white people as differing from white people by having increased prevalence of disease.

It would have been trivially easy to use the highlight colour to symbolise the disease and overlay it on multiple, racially diverse faces.  In other words, either the problem was not spotted or a choice was made to ignore it.  (See update at the top of this post.)

The end of AIDS?

My supervisor messaged me: “ABC news right now – the end of AIDS as a public health issue.”  Fairfax was reporting it too:

AIDS epidemic ‘over’ in Australia, say peak bodies

Australia’s peak AIDS organisations and scientists have announced an end to the AIDS epidemic, as the country joins the few nations in the world to have beaten the syndrome.

The number of annual cases of AIDS diagnoses is now so small, top researchers and the Australian Federation of AIDS Organisations [AFAO] have declared the public health issue to be over.  (Saimi Jeong, The Age 10 July 2016)

In blog posts and feature articles for some time now, I’ve been arguing that media framings, policy-making and popular understandings of HIV have lagged behind reality, holding onto notions of the ‘AIDS crisis’ and HIV as a deadly disease.

These ‘zombie notions’ impede sensible policy-making around prevention, such as the removal of outdated HIV-specific laws, and public funding for pre-exposure prophylaxis — medication that protects HIV-negative people from infection during condomless sex.

lazarus

Gary Dowsett first conceptualised ‘post-AIDS’ thinking among gay men in 1996.  In 2004, at a plenary session of the HHARD and HIV Educators’ conferences, I described myself as ‘pre-AIDS’ — born in 1981, coming out to myself in the mid-90s, the ‘AIDS crisis’ was over in the gay community before I ever joined it, and I’d had to reconstruct an understanding of what it had meant for the people around me.  More recently, cultural studies scholar and critic Dion Kagan wrote his PhD on ‘post-crisis’ meaning-making around HIV, along with a stellar series of columns exploring this theme in The Lifted Brow.

I understand the messaging from AFAO and celebrity scientist Prof Sharon Lewin in this context.  At first I wondered what it was about.  I think there are three things going on:

  • The number of people dying from AIDS, rather than dying with HIV, is now so low it violates statistical conventions against reporting cell sizes under 5.
  • AFAO might have wanted to shift the media and policy narrative and ‘claim a win’ to count against what’s starting to look like the inevitable failure of ‘Ending HIV‘.
  • Australia wanted an ‘announceable’ going into the AIDS2016 conference in Durban.

(Update: AFAO’s CEO Darryl O’Donnell did a great job challenging outdated narratives on ABC Radio National Breakfast this morning — you can listen to the interview here.)

A number of people have expressed concern to me that this announcement obscures the reality of ongoing, smaller AIDS crises in particular groups, including migrants and refugees, especially those who lack access to Medicare, and Aboriginal communities.

Since 1996 we no longer focus on deaths from AIDS nor even AIDS diagnoses — early diagnosis and treatment are the ballgame. People with late diagnosis, defined as a t-cell count below 350 per millilitre of blood, have elevated lifetime risk of serious illness, including cardiovascular events like heart attack, even after they start on treatment.

Update:  The figure below shows the heterosexual communities in which late diagnosis is common. Spoiler alert — it’s all of them.  And the personal impact of infection will be far greater for people are living in communities where outdated notions of HIV still predominate; where strategies to tackle stigma and discrimination are nascent or non-existent; and that in many cases haven’t yet developed cultures of care to support treatment and wellbeing.

Screenshot 2016-07-11 08.05.47

Source: Kirby Institute, Annual Surveillance Report 2015 p51 (pdf)

In other health issues, such as cancer screening, the identification of lower rates of screening in specific communities compared to the Victorian population average has been used to target them for additional funding and recruitment initiatives.  But the danger is always that small clusters get swept under the carpet, protected from identifiability by that convention against reporting cell sizes under 5.

My concern about this messaging is that it depends on policy-makers understanding that AIDS is not a journalistic synonym for HIV.

If they don’t, this message will look like a green light to ‘mainstream HIV’ — ditching peer based services and funding hospitals, nurses, social workers and MPH grads to ‘mop up’.  That would be more expensive than community-based services, but it would restore what the health system views as the natural way of doing things — top down, expert-led.

Bernard Gardiner, a PhD scholar working on a qualitative longitudinal study of aging, place and social isolation among people living with HIV in Queensland, and a respected elder of the Victorian gay community response to AIDS, puts it this way:

I think this is careless. This takes the pressure off Public Health officers working for Government, who see psycho-social support services for long-term survivors as unnecessary ‘hand-holding’ that Gov should not fund. It also disguises the reality that some long-term survivors struggle for quality of life with depression, multiple co-morbidities, cognitive issues, cancers/heart/renal issues, and poverty, and feel somewhat abandoned by the biomedical 90/90/90 focus.

Once upon a time a shift like this would have been thoroughly debated among the AFAO membership and communicated to affected communities via community media.  This would have provided an opportunity to prepare for the secondary messaging that will be necessary to make sure this message doesn’t backfire.  We live in interesting times.